Category Archives: Wise Before their Time

Remembering the AIDS Crisis

“I don’t have the words to explain how important this is.”

This sentence was taken from a review of my book about people with HIV and AIDS in the 1990s, Wise Before their Time.

Suddenly, the disease no one has talked about for years is everywhere. No, not as a new epidemic, but as the focus of popular culture.

In London, the French film BPM (original title: 120 Beats Per Minute) has opened and can be seen in fifteen different cinemas. It was premiered at the Cannes Film Festival in 2017 and has been showing in numerous other countries for some time. It tells the stories of a set of young men involved with the French version of Act Up in the early 1990s.

It was very highly reviewed and won many awards, including the Grand Prix at Cannes. I saw it yesterday and it was very powerful.

Meanwhile, a week ago, a two-part play called The Inheritance opened at the Young Vic Theatre in London. Directed by Stephen Daldry, it depicts the lives of a set of young American gay men over a period of time, including the AIDS crisis. The Telegraph newspaper gave it 5* and said it was ‘perhaps the most important American play this century’. I have yet to see it.

It happens that I recently read How to Survive a Plague, by David France, although it is not just released. It is, again, about AIDS activists but this time in the United States, and was issued first as a movie (in 2012), and subsequently as a book (2016). It is well worth reading as it chronicles the drama of the period.

And this brings me to my own book, Wise Before their Time, in which over forty people with HIV and AIDS talk about their lives in their own words. First published in 1992, based on interviews at an international conference of people with HIV and AIDS in 1991, it was re-launched last year to great acclaim. Have a look on Amazon, it has received nothing but 5 star reviews.

Ian McKellen wrote a Foreword in which he said “These stories are as powerful as any great classic of fiction”. That’s a good start.

And what do the reviews say? Many stress its importance, as in the title to this post. One reviewer wrote “This book’s intrinsic historical and cultural value is invaluable.”

Many explain the nature of the stories “often moving, even tear-inducing, and also occasionally funny” and “an honest, moving picture which touches a reader’s heart”.

And one urges “Do read this book. If not for anything else then just to understand and appreciate the beauty of being healthy and being alive!”

 

 

Revisiting Books Written Some Years Ago

Have you ever gone back to read books you wrote some years ago?  Most writers, I suspect, don’t. We write, we publish and we move on.

Some writers say that when they do go back, it makes them uncomfortable to see their earlier, less formed self.  They have learned so much in the meantime.

Indeed, some remove their own books from sale, lest readers think this is the best they can do.

Looking back with pleasure

But there is another response. Some of us return to old books to find ourselves surprised at how good they were. We have also learned much in the meantime, yet our earlier self was unexpectedly thoughtful. It is wonderful to discover.

Last year, I returned to two books I had written many years ago, which were trade-published. I was so impressed with both that I re-launched both for new readers, after getting my rights back (much easier than you think).

Ten years ago

cover of Life in a Hospice

The new self-published edition

Ten years ago, I wrote a book offering the thoughts of hospice staff about working in end-of-life care, Life in a Hospice. It had been published by a highly respectable medical publisher and had a Foreword by Tony Benn, a well loved MP. Indeed, it was Highly Commended by the British Medical Association in 2008.

But I was irritated by the lack of publicity by the publisher (taken over by a major conglomerate) and wondered how relevant it would feel today. Yes, what a delight. I was very touched by the stories and it felt fresh as a daisy!  That prompted me to take back the rights and re-publish it as both a paperback and e-book, but added a new cover.

RESULT: I must have been right, because after selling one or two books a year, it has sold nearly three hundred copies since March 2017. That’s not Harry Potter, but it is good for a book on hospice care.

Twenty-five years ago

cover of Wise before their time

Once topical, now of historical value

That experience prompted me to go back to a book I had published in 1992 setting out the personal stories of people with HIV/AIDS when it was a life-threatening disease, Wise Before their Time. It was long out of print, although there were second hand copies available on the net. I approached the task of reading it with some trepidation, as I could well have been embarrassed.

On the contrary, I found myself incredibly moved by my own book, which I had not read for twenty-five years.

Although the stories have no current relevance, as people diagnosed with HIV can now anticipate a normal life span, they had a historical significance.

Again, I took the rights back and republished it as both a paperback and e-book, again with a new cover.

RESULT: It is selling less dramatically, but selling nonetheless. And it has garnered nothing but five star reviews, which is pleasing.

Conclusions

I am not a young woman, so these books – old as they are – were not written in the full flush of youth. Perhaps if I were able to go back to writings from my twenties or thirties, I would well be embarrassed.

But for those of you who have traditional publications long out of print and wonder whether to just forget about them – think again.

Take them out and have a look. You might be pleasantly surprised. And if you are a member of ALLi, you know that self-publishing is easy.  The next step is obvious.

 

This post was first published by the Alliance of Independent Authors (ALLi)  See https://selfpublishingadvice.org/self-publishing-back-catalogue-hybrid-authors-advice/

Wise Before their Time – Five star reviews keep pouring in…

“This book describes an unimaginable amount of ignorance, fear and pain. Men, women and children, small babies dying of a mysterious disease and no one knows what it is and no one has the cure for it.

     “A giant ‘Infection’ was written above her name. She was asked to use a separate toilet from the other women, which had a red ‘Control of infection’ notice on it. She was miserable, frightened and scared for her children.  I realised what was happening and complained. The attitude was ‘Oh, we know HIV isn’t contagious, but we must follow our old guidelines.’”― Ann Richardson, Wise Before Their Time

There are too few book like this. There’s a story of mother and her young daughter Daisy. She was just learning to speak. A little bit late in walking. Then when she is sixteen months old, she stops walking.

         “My doctor had to inform the funeral directors that she’d died of an infectious disease. So when they came, they came in these suits and gloved. They just wrapped her in a plastic bag and took her away. And, well, it just was too much for me. I couldn’t cope, I just had to run out of the room.” ― Ann Richardson, Wise Before Their Time”

A book full of incredibly brave people writing their heart-breaking stories on what it was like to live with HIV and AIDS. I warmly recommend this for everyone.

This book’s intrinsic historical and cultural value is invaluable…providing insights and historical accounts which would otherwise be lost to time. These historic interviews are not only rare but also remarkably candid for their era. At times, the stories were alarming. No matter your feelings and beliefs on this disease, you owe it to yourself to read this book!”

*****

“Although the context in which Ann Richardson has reissued her book has changed considerably [since 1992], there is a freshness and an immediacy in many of the spoken and written interviews with people of both genders, of different ages and from different cultures. The stories are often moving, even tear-inducing, and also occasionally funny. Yes, HIV/AIDS before drug therapy was a terrible plague, which particularly hit Western gay men and heterosexual Africans and their children. But what comes over most strongly from many of the people who feature in this important book is their fortitude, in some cases their stoicism, and often intimations of real love.”

*****

“I missed out on a majority the horrors of the pandemic, but as Ann Richardson states in the foreword, my generation and the ones that come after it, are the reason why this book needs to be republished – so that people do not forget the horrors and fears of the past and, in some places in the world, the present; that we remain educated and continue to stand in solidarity with people who are HIV-positive and those living with AIDS.”

*****

“The voices in this book are powerful and sobering. They show the everyday realities of living with a disease that people, including doctors, knew virtually nothing about. They talk honestly and incredibly openly about all aspects of the experience of living with HIV/AIDS – from how they got their diagnosis, to confront their own mortality, to telling friends and family members, to their hopes for the future. Yet there is a definite sense of hope that, no matter how long the person had had the disease or what part of the world they lived in, they refused to give up, every single one of them. And that is surely, the true definition of inspiring.”

*****

“It was a sad book, something I wouldn’t dare to re-read but glad that I have read it. I remember reading ‘We Need to Talk about Kevin’ by Lionel Shriver and having the same feelings; as a parent, the book was so hard for me to read and yet, I was awfully glad I had read it. Wise Before Their Time is totally different in context from Lionel Shriver’s. It is a difficult book to read not as a parent but as a sensitive person.

Difficult times brings out either the strength or the weakness in a person. The person never stays same. He either becomes bigger or smaller. And it was heartening to learn that most patients after being tested positive came out stronger, wiser, and more mature.

The author, through interviews with patients, has presented an honest, moving picture which touches a reader’s heart. Do read this book. If not for anything else then just to understand and appreciate the beauty of being healthy and being alive!”

*****

“Wise Before Their Time is an enlightening compilation of individual stories and thoughts from those infected with HIV in the early era of AIDS. It saddened me to see how fellow humans treated one another. I was particularly disturbed by the story about a baby dying from the disease. Though there are also messages of love and hope throughout, I feel the book is a good educational tool about the stigma of the virus when not much was understood about it. An important read.”

*****

I believe it’s so important to remember the people behind their diagnosis. This book takes you there. Dietmar was so passionate to spread the word. It was a privilege to know & work with him.”

*****

“Wise Before Their Time” is both moving and informative. You are saddened by most of the tales. But at the same time, you learn that for the most part, after their diagnosis and treatment, the AIDS afflicted are grateful. Of course they are sorry to have AIDS. But they have all learned to love life more than ever before. This book is not only touching, it’s well crafted and will shed new light on AIDS for readers everywhere.”

 

World Aids Day today

Today is World AIDS Day, which only a few people these days will recognise.  It used to be a time of calling attention to the needs of people with this terrible disease – well, it still is, but fewer people are listening.

In my book, you will read about how it used to feel to be living with HIV or AIDS.  You may say that is no longer relevant or not of particular interest, but it is incredibly moving. Reviewers talk about ‘a very important read’ and ‘read it to understand the beauty of life’ – and that gives you a feeling for the kind of read it is.

Review: Wise Before their Time has similar impact as Lionel Shriver

 

It was a sad book, something I wouldn’t dare to re-read but glad anyways that I have read it. I remember reading ‘We Need to Talk about Kevin’ by Lionel Shriver and having the same feelings; as a parent, the book was so hard for me to read and yet, I was awfully glad I had read it. Wise Before Their Time is totally different in context from Lionel Shriver’s. It is a difficult book to read not as a parent but as a sensitive person.

The first edition was published in the time when AIDS was still considered a tabooed subject; being tested HIV Positive was an automatic death sentence and a social stigma; no one wanted to get associated with HIV Positive people. To read the book at the time it was published for the first time would have been, an altogether, a different experience. Things today have changed so much. The patients can talk about it openly. Access to antiretroviral drugs has become easier. HIV Positive people can live a better, healthier and a normal life. So in that context, this second edition of Wise Before Their Time serves an altogether different purpose: The feelings: what the patients feels, what kind of impact being tested positive makes on them, how they come to term with living with the disease, how the fear of isolation, rejection haunts them? The following lines from the poem ‘If You Want to Love me’ from the book beautifully sum up all the emotions in a few words:

If you want to love me
Then love me now.
Don’t look for tomorrow
And don’t ask me how.
I can’t give you a guideline
It is your love,
Your life,
It is you.

Difficult times brings out either the strength or the weakness in a person. The person never stays same. He either becomes bigger or smaller. And it was heartening to learn that most patients after being tested positive came out stronger, wiser, and more mature.

The author, through interviews with patients, has presented an honest, moving picture which touches a reader’s heart. Do read this book. If not for anything else then just to understand and appreciate the beauty of being healthy and being alive!

Avira N, author of YOU left me, sweets, two legacies: Famous Love Poems

New Review: “An Incredibly Important Read”- 5 stars

When Wise Before Their Time was first published in 1992, it served two purposes – to educate people on what life was like for the heartbreakingly large number of young people (and god, they were young) who were living with HIV and AIDS around the world, to try and beat the stigma and combat false information; and to directly speak to people who had the disease and who were feeling its often isolating and alienating consequences. I was born in 1995 and therefore missed out on a majority the horrors of the pandemic, but as Ann Richardson states in the foreword, my generation and the ones that come after it, are the reason why this book needs to be republished – so that people do not forget the horrors and fears of the past and, in some places in the world, the present; that we remain educated and continue to stand in solidarity with people who are HIV-positive and those living with AIDS.

I suppose I find some comfort in how much has changed in just my lifetime, a mere twenty years although to some it must feel like a millennia – HIV screenings have become commonplace with pre- and post-exposure drugs becoming far more readily available; the creation of needle exchange programmes in many countries around the world; and, more people than ever are engaged in an open and honest discussion about all aspects of the disease. Also, at least in my part of the world, living with HIV/AIDS is no longer seen as a negative on someone’s character and it is no longer solely talked about in hushed voices behind closed doors, moving into classrooms, university campuses and many other social arenas.

And I think that we have every person involved in the creation of this book to thank for a small part of that being made possible.

Each one of the voices in Wise Before Their Time is powerful and sobering. They show the everyday realities of living with a disease that people, including doctors as their tales repeatedly show, knew virtually nothing about. They talk honestly and incredibly openly about all aspects of the experience of living with HIV/AIDS – from how they got their diagnosis, to confront their own mortality, to telling friends and family members, to their hopes for the future. Expanding on the latter, there is a definite sense of hope that is forges the undercurrent for the entirety of the interviews as, no matter how long the person had had the disease or what part of the world they lived in, they refused to give up, every single one of them. And that is surely, the true definition of inspiring.

Cassidy

Older women and the AIDS epidemic

Do you remember the terrible AIDS epidemic in the 1980s and 1990s? Were you directly affected by it? We older women are all old enough to remember. But for some, it may have passed by as an awful situation that happened to other people, with little impact on their family or friends.

And for others – more than is often recognised – it had a dreadful import. Many were reluctant to talk about it to anyone. It was a time of great stigma and shame.

AIDS and Women

Because HIV was most rife in the gay community, it was often thought that it did not have a big impact on women. Yet, there were some women who acquired HIV through other routes, such as needle-sharing or partners who brought it home to them.

But to limit discussion to these women is to misunderstand the nature of human relationships. Whether or not we had HIV ourselves, we were also mothers, sisters and friends. Some of us worked in professions, such as dance or theatre that were heavily implicated. Many of us were deeply affected.

Wise Before Their Time

In the late 1980s, I met – and became close friends with – a young man who had been living with AIDS for a long time and was very active in the HIV/AIDS community.

In 1991, he was organising an international conference in London of people with HIV and AIDS and we decided to write a book based on interviews with some of the participants. In all, we interviewed over 20 people from 15 different countries about their lives.

These mostly young men and women described their efforts to cope with the stigma, blame and guilt associated with the disease. They talked about their difficulties in telling their parents, partners and friends. Not to mention coming to terms with a very early death.

The book, Wise Before Their Time, was published in 1992. Sir Ian McKellen wrote a Foreword in which he said, “this collection of true stories is as powerful as any great classic of fiction.” My friend did not live to see its publication. See https://myBook.to/Wise.

Bringing the Significance Home

I always saw a major audience for this book to be the ‘hidden’ mothers all over the world. Some might be too ashamed to tell their friends or neighbours about their son with HIV, while others might be grieving for a son who died too early.

The significance of HIV for all sorts of women was brought home to me on one very memorable occasion.

My parents were living in a retirement community, which sometimes invited residents’ children to give public talks, based on their expertise. My father was keen for me to give a talk based on this book.

Since AIDS was not a disease discussed much by ‘respectable’ people, I suspected this was not likely to be a very popular event! But my father was very well liked, and he told everyone that they had to come. The hall was therefore packed.

Silence

I did readings from the book for half an hour or so. At the end, there was a short silence before any applause. One friend of my parents told me afterwards, “We were all stunned”. But there was enormous response, with active questions and discussion.

Afterwards, I was swamped with women wanting to talk to me about their own situation. They wanted to talk about their sons, their brothers, their friends.

One woman asked me to come to visit her, because her son had died of AIDS, and she had never told anyone at all. Another left some cash in my parents’ mailbox with a request that it be given to an AIDS charity.

It showed how many women were affected by the disease, yet were suffering in silence, perhaps not realising how many other people were in the same situation.

AIDS is no longer a fatal disease, and people diagnosed with HIV can expect to live a normal life span. But I recently decided that Wise Before Their Time would have historical interest and I have now reissued it.

If you were affected by AIDS – or even if you weren’t – I hope you will find it very powerful indeed.

This post was first published by SixtyandMe (http://sixtyandme.com/remembering-the-aids-epidemic-and-the-lessons-we-learned/) and should not be re-blogged

“As powerful as any great classic of fiction”

So said Sir Ian McKellen in his Foreword to my book. And it is.

Do you remember the terrible times of AIDS and HIV in the 1980s and 1990s? If not, are you curious to learn what it was like for those diagnosed?

Wise Before their Time, first published in 1992, shows in moving detail what it was like to live with HIV/AIDS when there was no real treatment for this life threatening illness. It tells the true stories of over forty young men and women from all over the world attending an international conference of people with HIV and AIDS in London in 1991.

I have added a new cover and a short introduction to the new version, but the book remains essentially the same.

These were very young people (most were in their twenties and thirties) having to cope with an unexpectedly shortened life span.

They describe the difficulties of telling their parents, friends and partners of their diagnosis, while trying to cope with the day-to-day problems of staying healthy, keeping in work and supporting their friends.

They all experienced enormous stigma, blame and guilt because of the disease. This can be seen in all kinds of ways ­– from small things, like an Irishman being disappointed that friends did not want him to play with their child, to larger ones, such as man being placed alone in an isolation hospital in Goa for some months with no help.

They all knew others who had died. And one mother tells the story of the death of her toddler.

Yet this is in no way a struggle to read. It is touching, it is enlightening and it is sometimes funny.  But most of all, there is virtually no self-pity. On the contrary, the participants were committed to celebrating the joys of life to the full. Which is why I chose the title – they were, genuinely, wise before their time.

For more information or to buy: https://myBook.to/Wise

Five star review from an excellent journalist

Brave Voices from the Dark Era of HIV/AIDS

“When AIDS first hit the headlines in the early 1980s, there was widespread fear and ignorance. I remember an ernest young fisherman coming up to me on a beach in Sri Lanka in the summer of 1986, asking nervously whether one could catch AIDS from kissing.

These days, attitudes to the disease — and to the HIV virus that can lead to it — have changed considerably, partly because of more widespread scientific knowledge but largely because those who can access antiretroviral drugs (dispensed free to infected men and women in many countries, including the UK) can often live a normal life. AIDS is no longer an automatic death sentence.

So the context in which Ann Richardson has reissued her book of testimonies from people living with (or dying from) HIV/AIDS has changed considerably over the two decades since she and her (now deceased) collaborator, Dietmar Bolle, first produced it.

Nonetheless, there is a freshness and an immediacy in many of the spoken and written interviews with people of both genders, of different ages and from different cultures. The book is arranged thematically, covering major aspects of how people came to terms with their condition, who they told and how and the sort of support networks they developed — or their experiences of rejection and prejudice. The stories are often moving, even tear-inducing, and also occasionally funny. Yes, HIV/AIDS before drug therapy was a terrible plague, which particularly hit Western gay men and heterosexual Africans and their children.

But what comes over most strongly from many of the people who feature in this important book is their fortitude, in some cases their stoicism, and often intimations of real love.”

Jonathan Fryer

For more information or to buy: https://myBook.to/Wise